Luna's ZTTK Journey

Since the day she was born she has faced many challenges. Between struggling to grow, seizures, and developmental delays its been a journey. But despite this, Luna is the sweetest girl you will ever meet. 

Luna is 20 months old, two months ago we received the results that really shook our world. We knew for a long time she is a very special girl. We just did not truly realize how unique and frightening her situation actually is.

Some of you may have heard of this syndrome, many have not heard of it at all. Luna was diagnosed with a disorder called Zhu-Tokita-Takenouchi-Kim syndrome or ZTTK for short.

Because this disorder is so new, and there are so few cases actually documented there is little out there for answers. 

We wonder daily how this syndrome will affect our daughter, and what challenges she may face because of this.

We currently have her in physical therapy, where she has made a tremendous amount of progress! Months ago we were only dreaming of her standing, this has now become a reality due to the amazing team of people working on her case. She will need leg braces, and we have started the steps to get those things for her.

She sees numerous specialists to help support her disorder including, physical therapy, occupational therapists, neurologists (two different ones, one for disorder and other for seizures), endocrinologist, gastrointestinal doctors, and so much more.

This syndrome is a nasty one and affects every organ in her body from head to toe.

We are doing everything we possibly can to give our girl the best chance possible.

Unfortunately due to the circumstances there are quite a few things that are not covered under our insurance for her.

We are asking for the love and support of anyone who has it to offer.

Without these interventions Luna's chances of living the best possible life are limited. 

Please continue to share, and keep us in your thoughts and prayers as we navigate through this disorder. 

Every little thing helps right now, and we are so thankful for the continued support!